Finally Ulcerative Colitis Free: Almost 100% Healthy Because of Surgery

hi my name is Vinny and I had UC for about a year until i got my colon removed in November, it was the best decision of my life and i am almost 100% healthy again .

Finally UC Free: Getting My Colon Taken Out

My name is Vincent and I was diagnosed with UC in January of 2011. I missed the last the 21 days of school and went to two different doctors thinking that the first one was just diagnosing me wrong. After I switched to the best doctor in the area in Dallas/Ft Worth area for the rest of the summer, I was only in remission for maybe 2 months at the max. After I understood how serious this was I decided that there was a lot of things I couldn’t do like play football or go on vacation or be anywhere without a bathroom nearby. My social life quickly depended on if there was a bathroom nearby.
When school started again I was going to the bathroom 20-25 times a day and yelling in excruciating pain every time I couldn’t take it anymore. I went to my doctor after going to school everyday and being miserable when i got there. When I got to my doctor I told him that none of the medication is working anymore at all. The medication was taking a toll on my body and it changed my appearance of my face and my body. I quickly became very self conceded.. After a few more medications and appointment’s with my doctor i had another colonoscopy. My doctor narrowed my colitis down to severe and gave me 2 options:

Remmicade or Surgery.

My biggest fear was surgery!

I told my parents right there in the doctors office i am not getting surgery. But a few weeks later after we have talked more and more about remicade my thoughts started to sway towards surgery. Me and my parents found out that remicade doesn’t eliminate colitis it just forced it into remission. so most likely i would be getting an iv in my arm for the rest of my life… and to add on to that it was EXTREMELY expensive. I felt bad because our insurance wouldn’t cover any more of my medication and my parents have spent hundreds of dollars on dozens of medications that didn’t even work.

The more i started to talk to my doctor and other people about surgery the better it sounded for my future. Although the 2 part surgery is expensive my and my parents along with my doctor decided that this was the best way to go. The surgery was the next month, I counted down the days on my phone everyday. When the time came I couldn’t be more exited and scared at the same time but as soon as the medication kicked in i didn’t remember anything except almost passing out in the bathroom. I woke up from the surgery and the only thing I could think about was my team the New York Giants losing the night before on Monday night football. But other than that I felt great and it felt good to lay down and sleep through the night without having to run to the restroom 8 times. I slowly had to introduce new foods into my new body and bowel system which was hard i just wanted a hamburger…
The hardest part in between surgery’s is the ileostomy bag i have strapped to my side. it was very emotional for my the first time i changed it out in the hospital i couldn’t believe what i was seeing, but i quickly got used to it and now i can confidently say that I am an ostomy professional.

I even named my bag Kenny

and sometimes I draw faces on him

to put me in a better mood hahaa!

Anyways i am back in school and I go everyday on time now and it feels great to sit through a class without running to the bathroom. I am trying to get healthy again and gain my weight back so i can play football again for my senior year :). i cant wait for my next surgery so i can finally say this is all over… If you are thinking about surgery please leave a comment its a smart choice i would love to talk! Never give up!

I can’t take living with this any more. I’m up crampy bloody mess every hour and at work its a game to make it to the toilet…I refuse remicade. I’ve been on prednisone since aug which is killing me & I just started low dose naltexome..I want the surgery but surgeon said to lose 40lbs which I can’t even though I don’t eat due to UC. Plus I’m afraid of a bag the rest of my life if it goes badly. I’m 42 not 17 so risk of it not taking are higher….tell me how long your recovery took and Go Giants :-) world champs!

I am currently waiting to have my 2nd surgery in a couple weeks. I am 24 and had suffered from colitis for about 9yrs(It feels great to say I HAD colitis!) I tried Remicade but had 2 horrible reactions which I am still suffering the consequences from that. I was easily going 20 times a day and half the time it was nothing but blood coming out. Although I became really good a dealing with it in social situations, I couldn’t take it anymore. I was depressed and wanted to have a normal life again. Even though I am having quite a few problems with my ileostomy, I can already tell this surgery is the best decision of my life. My dr. was able to do it laporscopically which is great, its only been a few weeks and you can hardly tell I have a scar. My surgery was March 5th and have been back in school since the 19th and work since Monday and have almost all of my energy and mobility back. I know it’s not easy, but I promise it will be worth it! Good luck with everything.

Happy to hear things are going well for you and I hope that continues. I am scared of the idea of surgery
Do you have to wear a bag for life now? It probably sounds vain but the bag is the main thing that would hold me back from surgery.

I am amazed at the number of young people coming down with UC! Glad to hear your surgery went well and hope the next one goes just as well! You are young and have a lot of life ahead of you and now it can be lived UC free! I’m 51 years old and was diagnosed 2 years ago. It’s been horrible and my wife and I can’t believe I have this! This wasn’t supposed to be part of my life and it just seems like a really bad nightmare. I’ve tried all medications and have had 2 remicade treatments with little or no improvement and a reaction during the 2nd treatment. I’ve been off/on steroids and lost and gained 25 lbs several times now. My doc says I’m steroid dependent so when they start weaning me off, I come right out of remission and I’m back to square one. So, I am meeting with a surgeon in the next couple of weeks. There’s a good possibility I won’t be a candidate for the J pouch due to other issues I’ve had from the UC so I may have the bag forever. That scares me but at this point surgery sounds like a relief. Again, hope things continue to go well for you!
Bill

I am going to talk to my doctor about surgery. I am not going to take Remicade. Have not told him that yet but he probably has a idea. I need a good surgeon and hope he can help me with that. I know it is painful at first. I will wear the bag which will be hard, but their are ways to conceal it. My husband does not like the fact that I will be cut into. He is scared right now.

Hey guys, I just received the news yesterday that I have been diagnosed with uc. At this point I am very concerned about my future seeing how my job requires constant walking, long hours and stressful situations. I hear many horror stories about never finding the right meds. I have never had a surgery but would be willing to dive in head first if that’s what it takes! How long do you think I should try trial and error meds before deciding? 25 yr male

Eddie, I would give surgery some time. From what I have heard and experienced if you take something like Asacol regularly, which I haven’t heard of any side effects its just not the easieast remembering to take it 3 times a day at first. When you do flare up a doctor will usually prescribe short term steriods for about 10 days. I tended to have maybe 2 flare ups a year and the prednisone steriod would get me back in remission in a day or two. I never had any bad reactions to prednisone for these short terms, I would just miss a day or two of school or work with the flare up waiting for the prednisone to fully suppress the inflammation.
Down the line if those don’t work things get a little complicated starting azathioprine which didn’t work for me and I couldn’t even tell I was on it and it also takes 3 months to start working if it will work for you which many it does.
After that is where you have the big decision of Remicade or surgery. Maybe by the time you might get to that point the options may change as well.
From my personal experience I feel great now, but I am not impressed with my doctor, which I would have changed with different insurance a long time ago, so having and a good doctor that listens to you and isn’t impossible to get in touch with is extremely important.

Di: It may sound crazy not but if things are getting worse for you and you hate the medication, even if you have to live with the bag for the rest of your life its not as bad as everyone thinks i would much rather live with this than uc everyday!

Tracy: i don’t have to wear the bag for the rest of my life but its not that bad for only having it 3 months in my situation. my next surgery is march12 and i cant wait then i will be bag free. don’t let the bag hold you back from surgery especially if you are able to do the 2 part surgery and get rid of the bag after a few months. like i said i would much rather live with this bag if medication inst working and your miserable like i was! i would consider surgery if your having trouble! let me know how everything goes.

Eddie: if i was you i would ask your doctor what medication he wants you on. there is a lot out there and most people stay in remission for long periods of time on medication find out what medication works for you and go from there!

vinny,how long was the sugery? dont think i can take it much longer the bag freeks me out,but being in the crapper all day and night is killin me,let me know how ur making out,thanks bro.remicade is a waste of money and time,these docs just want to keep getting paid,they know none of it really works?best of luck to ya.

rico, the surgery was about 3 hours but the medication is so good it went by fast and like i said i felt no pain when i got up it was great i was just mad my team lost the night before. the bag is alot to take in especially when you have to change it the first time but you get used to it quickly and forget its even there when you leave the hospital

Super awesome to hear your doing so well, I was in the same boat with everything, having the bag does suck but it is a lot better than UC! And if you are living in Dallas/ Fort Worth area and ever come to College Station hit me up I can show you around, also Texas A&M is a pretty awesome school man just a thought as you go into your senior year.

Wow, you really went for the surgery quickly. I have had UC since 2009 diagnosed and since 2008 undiagnosed. I have an appointment with the surgeon on March 15th. None of the medications work on me. I have been trying supplements and they are working, but my colon still gives me issues every day. If I don’t eat anything, I’m fine, but I must eat. The supplements have stopped the bleeding completely. They haven’t stopped the reaction after eating, but the reaction is slowly getting better and better. My appetite is back, but that is really slow. When I was very ill and hospitalized two months ago, I had no appetite at all. I only ate because I knew I should. I am TERRIFIED to get that surgery. I can’t believe you did it, but it is a relief to hear that you are currently doing well after the surgery and that you are doing better than before.

I was diagnosed with UC at 22 and am 27 now. For the first few years asacol worked pretty well with prednisone for occassional flare ups. When I was about 25 things started getting a lot worse. I’ve never had urgency to go really, but bleeding and diarrea plenty which prednisone seemed to take care of with short treatments before this. The abdominal pain would always be extremely bad for me no matter what I tried, just a strong constant ached that I would get 0-1 hour of sleep a night for long periods of time which caused me to take an extra 2 years in school.
I then started azathioprine after being on large doses of prednisone for almost a year straight, which I gained weight from 170 to 205 pounds. The azathioprine didn’t help at all and I didn’t even notice that I stopped taking prednisone when I did.
Finally I found a general doctor in the meantime to prescripe me either percocet or lortab for about 5 months until my gastroentroligist finally noticed from a colonoscopy that the azathioprine was not working even though I told him I could not even tell I was taking the medication. With those pain medications I lived a perfectly normal life without any problems finally instead of struggling to get off the couch every day since my doctor did not believe me the azathioprine was not working and would not move onto another medication for nearly a year.\
I recently have been on Remicade (infliximab) and have had 3 treatments now and I feel normal again like I did on the large amounts of narcotic pain medications or before I was diagnosed with this disease. After each of the first 2 treatments I felts slightly better but still had a lot of pain, but then my dosage was doubled for the third treatment and so far it is working perfectly.
The negatives of it are the expense and having to get the 3 hour infusion every 2 months and the slight chance your body will react to the treatment in the future and surgery will be necessary.
But with surgery there are negatives as well like the very slight risks of complications, the pouch for 2-3 months, the more frequent and irregular bowel movements.
The choice is extremely difficult when it gets to this point, new medicines and possibly a cure could be developed with the advances in science, but you don’t want to put off surgery until your condition is so bad you can’t have the internal J pouch surgery.

Trent: i would love to go to A&M but its a huge school but i will defiantly apply.
Wendy: that will be right after my next surgery but don’t let the surgeon scare you because he scared me the first time. just jeep looking forward to being healthy with no colon after a few months :)

35 year old male–I’m 4 years removed from surgery after rapid onslaught of UC that came on over 3-4 months out of nowher–eventually put me in hospital for ten days and became clear that surgery was only choice for me as no meds worked–in ICU in 24 hrs leading up to it–so–wasn’t really a choice on my end if I wanted to keep living–and while it was a pretty big surgery that took a good month plus to fully recover from given I’d lost so much weight going in (35 lb on 170 lb frame) –it cured my disease. Last 4 years I’ve led a totally normal life on all levels–and I’m much happier now w my new plumbing than I would be were I battling the disease in same way I had been in months leading up to surgery–haven’t reconnected things–personal decision more than anything else–and it’s amazing how normalized my life has become now–you just get used to it and it’s really no big deal.. I eat/drink/exercise/enjoy life w no limitations now–have 1.5 yr old daughter now as well. Moral of story is that while surgery maybe is and should be last resort–it’s really not as bad as one might imagine–nor is wearing a pouch– can be life changing in a really awesome way if you’re battling a pretty severe form of disease over extended time and medicine doesn’t really work..for me, current set up so much better than hell I dealt with over those 3 months–limited diet, bathroom all day everyday, losing weight and having it be such a big physical and emotional drain–no thanks. Life is great now for me.

jonathan i do have a facebook my name is vinny barton and its all over im in he hospital laying in my bed. i feel so good without this dumb bag in me im just alittle sore but the worst part by far is the cathiter :/ NO COLON OR BAG!!!!!

Thats awesome man! I can’r wait to have the bag off! The catheter is the worst man, I wish they could knock us out for a few minutes whenever they remove it! I tried to look you up but I couldn’t find you on there.

I have had UC for two years, i have literaly tried all of the medications, this past week i was admitted into the hospital because my stools were up to 20 a day at the least, full of blood and cramping, my meds were not working, i was going throughout the night, sleep deprived, no energy, i spent a week in the hospital, they gave me a pickline for nutrition and surger and stuff, now im at home, still with a pickline, i have decided its time for surgery, nothing ever works and i cant deal with it anymore, and could anyone describe the pain of this surgery to me? Thanks!

Hey Clayton, everyone has different experiences with the surgeries. For me, my first two surgeries were significantly painful coming out however as soon as you get back to the room they drug you up really good and the pain isn’t bad at all. The mental aspect of the surgeries outweighs the pain in my opinion.

I have had the bag for almost 7 months because my surgeon wanted to have the operations in three stages. I had colitis for 11 years before deciding to have surgery and she felt it would be better to detox my body and give it plenty of time to heal.
i guess it all just comes down to what you and your surgeon are most comfortable with.

Glad to hear a good story about getting the operation! I have had UC for about going on 19 years now….yeah, 19 years with this stuff! So far (knock on wood), I have never been hospitalized. My doctor has me at an acute case of UC…not severe. I still wonder about getting the operation. Doc says that I am not severe enough to warrent the operation.

I am an active person and this UC sure slows me down in both the physical and mental ways. Sometimes, I fell that the mental part can even be worse! Can you say panic attack? :o) I am finding it very hard toi deal with this disease after this long of a time with UC.

Sure glad to hear that you are doing well with the operation. I envy you! :o)

hey jonathan i sent you a message on facebook.
clayton: everybody experiences the pain differently but my pain was not too bad because of the medication it stays under control pretty well. if any of you guys have questions or wanna text me my number is 817 233 2820 i love to talk to people about this disease but i dont get to the computer much! thanks guys keep praying